Karin here : While setting up this blog for Sonja in September of 2011, the only way to know more where this journey would take Sonja, was to read and explore what was available on the internet. At that point we did not know of any other MSA patients in South Africa. It was virtually unheard of.
Personal encounters on blogs, available information on medical websites and snippets on Youtube were all quite alarming and frightening. Both the lack of information as well as the information available were equally confusion and at times it all seemed like a bizarre nightmare that wwould soon be over. The nightmare didn't end; it was merely the beginning.
Personal encounters on blogs, available information on medical websites and snippets on Youtube were all quite alarming and frightening. Both the lack of information as well as the information available were equally confusion and at times it all seemed like a bizarre nightmare that wwould soon be over. The nightmare didn't end; it was merely the beginning.
Both Sonja and I have tried to remain positive with all postings and communication despite the fact that we were establishing more contact with other MSA patients and discovering and learning more of the grim and bleak situation that lay ahead.
We could see that Sonja's future was leading to being confined more and more to the walls of her house. The brand new designer kitchen is a constant reminder of the entertaining mecca waited and dreamed for. You see, to be able to cook you need to stand firmly - on your own two feet. You need to be able to use knives - with anticipated control (and no shaking)to chop, cut, peel and dice. You need to be able to swing around between the fridge, the stove, the basin, the cupboard, the bin, etc. You need to bend to reach for a bowl, a plate or a pan. This is not possible if you have no control of balance. You need to have consistent blood pressure so you don't get a dizzy spell or worse get nauseous simultaneously. You need to be able to grip a pan, stir with a spoon, flip with a spatula, stand balanced, bend over, grip the hot bowl of lasagna, stand up, turn, set it down - all without even thinking about. I can, you can, many can. Sonja can no longer do these things. Getting the idea?
Most people can still undress, dress, bath, shower, sit down, get up, walk, turn around, run, jump, bend to pick up a child or puppy, dance; all with relative ease. Sonja, my friend, can no longer do those things without help. All this - in a relative short span of time.
Most people can still undress, dress, bath, shower, sit down, get up, walk, turn around, run, jump, bend to pick up a child or puppy, dance; all with relative ease. Sonja, my friend, can no longer do those things without help. All this - in a relative short span of time.
Since the birth of this blog, I have seen Sonja's physical abilities wane. At the same time, I have seen her inner strength develop its own invisible legs. I have watched her embrace this blog and the facebook page - 'playgrounds' I made for her for when boredom and frustration overcame her. With grace she has accepted the challenge and uses these spaces with comfort and ease to express herself. I observe her courage, admire her dignity and applaud her determination. I will continue to support her - with love.
Trying to understand another's situation is probably one of the greatest gifts you can give someone with any kind of disability.
How?
Just 'like' our page (top right hand somewhere) go on - you can!
Read our blog and / or forward it to someone - today.
http://msainsouthafricawithsonja.blogspot.com/
Tell someone that you heard of another rare neurological condition - called MSA (without feeling that you have to know everything about it - its impossible - that's why there is no cure!)
If you are stuck indoors, don't get out much - the internet is your oyster isn't it?
Why?
Because you WILL become a part of the chain of life and living and caring for humankind - which is one of the most fundamental reasons for living.
Who am I? I am Karin - the 'walker' ... the healthy one ... the one who cares for my friend Sonja. Sonja has MSA and is the main character of this page and this blog.
People often feel helpless - because we cannot DO something in situations like this. You CAN - you are reading this - ' like' the page. Read the blog. Forward / share / tell. You will wonder whether it will matter - but you will KNOW if you didn't."
Be blessed.
Karin
To finish, I share with you what I wrote on our facebook page today:
"If you are a visitor for the first time, whether you have MSA, or lost someone to MSA, or you are a carer, or just curious or whatever your reason for landing here today - pause a moment please. There is a reason you are here today. Become part of our voice ... become part of our dream - to find a cure for MSA.
How?
Just 'like' our page (top right hand somewhere) go on - you can!
Read our blog and / or forward it to someone - today.
http://msainsouthafricawithsonja.blogspot.com/
Tell someone that you heard of another rare neurological condition - called MSA (without feeling that you have to know everything about it - its impossible - that's why there is no cure!)
If you are stuck indoors, don't get out much - the internet is your oyster isn't it?
Why?
Because you WILL become a part of the chain of life and living and caring for humankind - which is one of the most fundamental reasons for living.
Who am I? I am Karin - the 'walker' ... the healthy one ... the one who cares for my friend Sonja. Sonja has MSA and is the main character of this page and this blog.
People often feel helpless - because we cannot DO something in situations like this. You CAN - you are reading this - ' like' the page. Read the blog. Forward / share / tell. You will wonder whether it will matter - but you will KNOW if you didn't."
Be blessed.
Karin